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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. J

    P2P, or not P2P, that is the question

    Read The Call for Opposition by Gabby Klein, and the comments, to understand why you should officially protest. P2P has said it will not retain submitted comments, this means that your comments will not be considered at all. http://phoenixrising.me/archives/26387 Comments on the discussion of...
  2. J

    The Best Drug for ME/CFS? The Other Side of Klonopin: A Patient's Story and A Survey

    Klonopin/clonazepam for many is the only long-term palliative treatment until such time as disease treatments are available. Gabby’s unrealistic expectations of the drug were partly the fault of the doctor but also Gabby for not being responsible and researching this herself. Klonopin is not a...
  3. J

    IMEA-New M.E. Association

    Canadian is a neurological ME definition, I can't keep up with the pace of the posts, ISO what I meant by reclaiming ME is just that, it exists in the WHO at G93.3 and in ICD9-CM at 323.9 and so it can be reclaimed to give us a clear-cut diagnosis that cannot be confused with Reeves CFS or CF...
  4. J

    IMEA-New M.E. Association

    Insearchof, the truth is the first casualty in any war! There is far too much ignorance about how the well-defined epidemic neurological disease ME was covered up by the CDC and replaced by the indefinable CFS, which has downplayed the disease as some kind of depressive fatigued state that can...
  5. J

    IMEA-New M.E. Association

    M.E. was covered up by the invention of CFS - Reeves Disease (CBT/GET) The WHO official clarification of ME and the troublesome term CFS "ME is classified at G93.3 and is a specific disorder. The term CFS covers many different conditions, which may or may not include ME. The use of the term...
  6. J

    CAA is Listening

    CAA is Listening ... to CDC and Insurers? This conversation has been going for a year and things have only gotten worse, with McCleary's damaging supportive response to PACE and Vernon's offhand dismissal of the proteomes in spinal fluid study. This is what McCleary gets $177k for? How much...
  7. J

    Article: CDC Chief Unger Pledges to 'Restore Trust' - Agrees to Meet with ME/CFS Reps

    We cannot trust Pandora to speak for us so don't get your hopes up. CAA is now a research organization so they are in competition with WPI and Pandora is also in competition with WPI because they want to set up their own NEID centre of excellence so they don't support WPI either. WPI has a...
  8. J

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    Why does the outrageously expensive CEO only talk through you and Cort, oh don't bother we already know. If she were forced to be honest she would fess up and resign because she mislead the patients, burned money on useless projects, colluded with the CDC and refused to do anything about the...
  9. J

    Article: CFIDS Association Of America Interview with Jennifer Spotila

    Why does the outrageously expensive CEO only talk through you and Cort, oh don't bother we already know. If she were forced to be honest she would fess up and resign because she mislead the patients, burned money on useless projects, colluded with the CDC and refused to do anything about the...
  10. J

    Humic & Fulvic Acids

    This is very exciting news Michele3d, there is hope in the information you have provided for those of us desperate for treatment and knowing how slowly traditional medicine will progress it could be too many years and some of us can't wait for that. I knew there had to be alternative treatments...
  11. J

    News from WPI symposium: Name change to be proposed for XMRV

    They did in 1987 and that is why the CDC changed the name to CFS. Have a look at CFSCentral blog, topic: Commotion in the blood, timeline and bloodline, under 1987!
  12. J

    News from WPI symposium: Name change to be proposed for XMRV

    Wingfingers I agree totally that ME was fine just the way it was for decades before CDC came along and spun a story about CFS which has caused us untold grief ever since. Some people are saying that the retroviral cause was a factor in the change to CFS which has never described the disease we...
  13. J

    News from WPI symposium: Name change to be proposed for XMRV

    Dr Yes is right! Dr Yes, thank you! That's the kind of straight talk I like to hear, HGRAD is patently absurd and doesn't make sense in regard to the diversity of gammaretroviruses. It doesn't make sense and there must be more to this than we are being told. I don't even know who that...
  14. J

    The term "Post Exertion Malaise" is also insulting.

    Post Exertional Morbidity makes medical sense Its easy to overthink things and ignore the obvious just because it isn't exact, but nothing ever is. The primary medical definition of morbid is diseased, and co-morbid means additional diagnoses, so Post Exertional Morbidity would pass as the best...
  15. J

    Dr MyHill's License in Jeopardy

    The patient complaint was lodged by a BSer Its probably been deleted now but I was following the BS forum and remember one BSer talking about having seen her years ago but had not followed up on her treatment and that he was going to complain about it anyway to ramp up the case against Myhill...
  16. J

    HOT! Coffin, Sharma, and Goff@ Conference on Retroviral Infections...

    Thanks for the welcome from you all. I don't find the science boring, its become a scientific thriller reading about how this research is panning out and I have enjoyed reading the posts and learning so much here. That has made my mood so much better lately. So has knowing Reeves got demoted to...
  17. J

    HOT! Coffin, Sharma, and Goff@ Conference on Retroviral Infections...

    Great news from the retrovirologists on a forum about scientific matters for adults. Something doesn't fit. What's with the childish emoticons? Are the grownups unable to use english to explain themselves? Criticism expected as we all make mistakes. A worse mistake is not realizing that and...